Thursday, November 19, 2009

NIH Thinks I DON'T Have MS. Wow!

Well, after four months and a huge amount of poking and prodding, the National Institutes of Health Neuroimmunology team has decided that it's very unlikely that I have Multiple Sclerosis.

Holy shit.

Despite the fact that I've been disputing my diagnosis almost since the day I received it, and this news should be hugely validating, it's left me a little breathless, my head spinning faster than a chunky yuppie trying to lose her love handles at the local Bally's. Not exactly doing a victory dance here, and not only because I could just as soon dance as crap the Hope diamond.

Since July, I've made four visits down to Bethesda to be seen by the doctors at the NIH. During that time, I've undergone extensive testing, the results of which seem to confirm my long-held suspicions about my diagnosis. I only have one central nervous system (CNS) lesion of consequence, located at the base of my brainstem, and this lesion has not changed one bit during the eight years I've been getting regular MRIs. The lesion appears to be an old scar, and doesn't look to be "active". The very name "Multiple Sclerosis" implies more than one lesion, so right there we have a problem. Additionally, multiple tests reveal no evidence of inflammation or immune activity in my CNS, another hallmark of MS.

My test results look more like those of a patient who had suffered a damaging central nervous system "event" at some time in the past, had suffered disability at that time, and has remained stable since. In actuality, though, I've experienced a slow and steady progression of symptoms. When I first took note of the fact I was limping, 6 1/2 years ago, I could easily walk several miles, and the limp was the result of some slight weakness in my right knee, which only showed itself after a good long hike. Fast forward to today, when my right arm and leg are basically paralyzed, and I have increasing weakness and numbness on my left side as well. My progression has been continuous during this time, which is a complete disconnect from what my test results would appear to reveal.

My clinical presentation (disease history, physical neurologic exam) does resemble that of someone with PPMS, so it still could be that I have a very, very atypical form of that disease. The NIH thinks it more likely, though, that I'm suffering from some other progressive neurologic illness, of which there are more than a dozen. Unfortunately, none of them (including PPMS) currently has any treatment, and my symptoms and test results don't neatly fit into a diagnosis of any of them. I could be suffering from some new "Wheelchair Kamikaze Disease", and even though new diseases are usually named after the doctor that discovers them, if this is a new disease, I absolutely insist that it be called "Wheelchair Kamikaze Disease". Not exactly the rock star fame I was looking for in my younger days, but any port in a storm...

The other big news out of my examinations down in Bethesda is that I do have a vascular abnormality like those that are described in the CCSVI theory of MS. For those unfamiliar with this theory, which hypothesizes that MS is actually a vascular disease, I've described it in two previous posts on this blog, here and here. I believe this is must reading for anybody who has MS, as this theory could change everything we think about Multiple Sclerosis.

I had a CT venogram done several months ago, which revealed that I have a stenosis (narrowing) of my left internal jugular vein, very high up in my skull. This narrowing is directly adjacent to the central nervous system lesion on at the base of my brainstem that is causing all of my problems. Though they're far from sure, the NIH believes that this vascular abnormality could be related to my neurologic degeneration, so we're going to investigate that possibility further, through additional testing, to see if a connection can be made between blood flow problems and the damage being done to my nervous system.

There is currently a doctor in California who has done endovascular surgery on several dozen MS patients who have been shown to have stenosis, placing stents in their narrowed veins. So far the results have been encouraging, but I'm going to wait to see what the NIH and my primary treating neurologist (Dr. Big Brain) have to say on the matter. Despite the NIH results, Dr. Big Brain is not convinced that I don't have MS, and hasn't bought into the vascular theory, either. I have an appointment to see him on December 5, when we'll try to hash these things out.

On the cataract front, I'm less than thrilled with the results of the surgery, so far. I paid quite a significant sum out-of-pocket for special lenses to be implanted into my eyes, to replace my natural lenses which had developed cataracts. I was told these implants would very likely give me near normal distance vision, but that I would still require reading glasses. To a person who's been wearing glasses to correct his nearsightedness since age 6, the promise of "near normal" distance vision sounded almost too good to be true.

Well, it was. As it stands now, these miracle lenses have overcorrected my eyes, and now the wonders of modern medicine have magically transformed my former nearsightedness into farsightedness. Abracadabra.

After the second surgery, the doctor told me to buy some drugstore reading glasses so that I could read while my eyes healed. Surprise, surprise, when I put the reading glasses on, instead of clearing up my close up vision, they improved my distance vision. In order to read, or see a computer screen, I had to buy a second pair of drugstore reading glasses, which I wear in front of the first pair in order to see the fracking screen. So, yes, as I sit here writing this, I'm wearing two pair of drugstore reading glasses. Can a guy catch a break? To top it off, the glasses that correct farsightedness are the kind that make your eyes look really big, so now I can look forward to zipping around in my wheelchair all bug eyed. Incredible that despite being half paralyzed, I'm still as vain as a homecoming queen, isn't it?

I have my next follow-up with the eye doctor on November 30, when my eyes will be healed enough to get a final prescription for glasses, but if my eyesight has not improved by then, he's going to get quite an earful. Jackass.

Okay, deep breath, time to kick into high gear some of that Zen stuff I'm always talking about. But first I think I'm just going to curse a lot, like a Tourette's patient on Red Bull. Cover your ears...

13 comments:

"But first I think I'm just going to curse a lot, like a Tourette's patient on Red Bull. Cover your ears..." I'm not sure whether I want to laugh or cry with you. How about laugh until I cry. Sometimes I cry until I laugh but it's not nearly as easy.

With or without MS, nothing's changed but the title. That sucks. I hope the CCSVI will lead you down a brighter lit road.

Marc, Oh Marc I am sorry to say I laughed so hard that my morning coffee leaked out. I am praying that the CCSVI will be your port and give you some relief. Thank you for keeping us updated and also giving some laughter to a horrific situation that we all seem to be riding with, not by choice.Be strong patti

My SIL upon hearing of my MS gave me good advice. "don't forget to breath". I had a Tourette's student. Her fav. was "f***, f***, f***" or "S***,s***, s***" Through behavior management she overcame it. We never gave her Red Bull! There's hope for you!!!!So sorry for outcome. MS sucks but doctors can too. Ah, Marc.kicker

well i've laughed with you in the past, cried with you......might as well curse with you too, lol. And let me tell ya, i can curse as good as any sailor.......so if you hear some real good ones coming from the mid west..well, thats ME

hang in there my friend, the drs are liable to figure it out, in spite of themselves. I always tell my hubby i want a definite diagnosis at my autopsy since i can't get one in life....

I saw the webcast earlier today and was interested, although I'm not sure I buy it. Just as they said, much more research needs to be done. I am also enrolled in several studies at NIH. Did you have any 3T or 7T MRI tests done by Dr. Bagnato? She studies vascular structures related to lesions and free iron in the brain all related to MS.I'm impressed that your question was addressed during the forum today!You can reply to me a fred at m (no space)morris then a dot com.

How can someone with 'atypical presentation' MS get evaluated at NIH? My lesions are more typical of NMO (due to their length) but I have no eye trouble nor NMO antibodies. There are several other ways in which I don't seem to have more common manifestations or signs of MS. How can I get further assessment?

Sorry to hear about how you feel. I've had MS for almost 10 years and all of the first line drugs have failed me slowly over time. I am thankful to live close to NIH and because of my condition I am in a study to evaluate a new drug for "highly active MS."

They have been incredible throughout the whole process. They do monthly exams on me, take my phone calls when I call in, etc. Sorry you were not selected for their trial. They are a research facility..

I am farsighted on my right and shortsighted on my left or is it the reverse? ;))) I can't remember which is which. I always carry three pairs of glasses (the third one is a pair of sunglasses).... Hilarious post, Marc. I really hope you will get to the bottom of the question. I always have a good laugh, not at you but with you when I read your blog. Laughter is the best medicine :)

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...